Thursday, April 9, 2015

SXSW, Part 1

On March 15, along with David Kopp of Healthline, I moderated a core conversation at SXSW. Being selected to do this was a great honor, and it wouldn't have happened without you, my regular readers.  So I obviously want to share some of my experiences with you.

What is SXSW?

South by Southwest, or "South by" as the natives call it, is a huge technology, gaming, music, interactive and film conference held each year in Austin.  It's hard to describe how much goes on. There were hundreds of talks by thought leaders in their respective fields, showings of new films and music by new bands as well as video game demos.  There were robot petting zoos, a maker zone, a job expo, a trade show, a comedy section, and so much more.   Keynote speakers range from Jimmy Kimmel to Malcolm Gladwell to Al Gore to Princess Reema of Saudi Arabia.

It is busy and crazy and full of passionate and interesting people sharing things they love and are knowledgeable about.  If you are old, like me, and are worried about the millennials, take heart.  They are smart, socially conscious and full of enthusiasm, even if they are glued to their phones.  Austin itself is a lovely city, growing rapidly, in part because of this conference  The energy sizzles. It's a wild west of ideas.  Natives though, stay away, as crowds and traffic overtake their city.

SXSW is full filmmakers, music producers, technology experts, all people full of enthusiasm who tend to the younger end of the spectrum.    Most of the people I saw were in their 20s, maybe a few 30s.  My grey head was the only one bobbing and darting (slowly) through the crowds of people, and I'm sure a few wondered why somebody had invited their grandma.  Standing in the line to get their badges, I couldn't help but notice that everybody around me could be my grandkid.

Although I'd heard about this festival, I had no clue what to expect.  I applied to speak on a lark, spurred on by Healthline. I only know I have a topic I feel strongly about, which as you all know is metastatic breast cancer, the end of "awareness"  and the need for more money to be directed towards research.  Over the course of the past year, I have learned that the search for a cure for breast cancer is insanely complicated and much more problematic than I had thought when I started this process, and in the future I'll focus my blog on some of what I've learned.

One thing has become crystal clear:  early detection is not the alter we can lay our hope to end breast cancer.  We tried awareness and early detection, and in 30 years, raw breast cancer deaths have actually gone up, by quite a bit.  We now know that no matter how early breast cancer is found, in some cases it still spreads.  What we don't know is why.  And in that "why" is the key to cure.  So that is what I was there to talk about.

I wrote an article on this topic - please share it.

In moderating a Core Conversation, I wasn't giving a speech - good thing because with chemo brain I can barely remember who I am much less keep an entire speech in mind. The goal was talking to others who had ideas, experiences and who were interested in the topic and getting them to open up.  David was the true moderator, directing the conversation and asking questions, and I was the "expert" having been in treatment, reading a lot about it and sharing a personal point of view.  I will share the success of the talk in another post, and there is video that has not been released yet but at some point, I can hopefully share with y'all, as the Texans say.  But a lot of other stuff happened during the five days, some exciting, some touching.  So here are my random thoughts.

Traveling with Cancer

I arrived midnight on the 12th, with our talk to be held on the 15th, which gave me a few days to adjust to the time change.  I'm in a weird place in my life - healthy enough to finally be able to travel and do things like this, but not healthy enough for it to be easy on me or even really enjoy it. Recovery, once home, literally took a week.

Most people think that when they are diagnosed with an incurable cancer, that they would travel and go on adventures.  The truth is, for me and many others, if you are in treatment, you are too sick to go anywhere.  Despite what you've heard, chemo is not a walk in the park and it makes travel nearly impossible.  When you do chemo after radiation after surgery- for years- the most traveling you do in one day is from bed to couch, and your dreams change from a Hawaiian beach to a hot bath.

Now, after being NED for a year, I am better. Not healthy by any means, but I can do it.  I'm not spending 3 days unconscious in bed, or staring out the window at my birds.  I can move.  I'm exercising.  I'm able to go shopping (although not without pain) and I can get up at the incredibly early hour of 10:00 a.m.   Yet, travel is physically demanding, and I don't look forward to it.  (Whine ahead!)  If I stand up for more than a few minutes, I have stabbing pains in my side.  There is no explanation for this, and so no solution.  My back hurts.  I get headaches easily.  My shoulder and right side is weak.  Carrying bags is hard, walking is hard, keeping odd hard.   I only have about 5 hours a day in me before I crash and burn (or take a ritalin to keep going) but, I must remember, that 5 hours I more than I've had in years.  Progress is incremental and because a cliche is in order:  it is not where you are now, it is how far you have come.

Eating is one of the most difficult things I face - I must get calories into my body but somewhere in treatment I left my appetite behind, and not only don't I feel hunger, it physically hurts to eat. I hover at 94 pounds and that is worrisome to my doctor.   Being off schedule makes it worse.  I think I only ate twice during my five days in Austin (not counting fruit for breakfast. (Those two times were pretty good though!)

We stayed at the Hyatt Place in Downtown Austin, central to all activities.  The Austin Convention Center was right across the street, the Marriott where my talk was held was two blocks away.  So I was situated perfectly.  The hotel staff was solicitous and kind, and the place was spotless and contemporary.  But there was a serious problem - the room only had a shower, no bathtub.  For a person whose bones ache terribly, and who walked 4,000 more steps per day than normal (which is 40)  a hot bath is a necessity.  I missed a bath every day that I was there.  Like the proverbial starving person talking about burgers and pizza and ice cream, I kept talking about baths and hot water.

So, here I was, at one of the most exciting and youthful events in the country, nervous about my upcoming talk and noticing my age and infirmity,  and longing desperately for a hot bath.

Would it be worth the pain?

Thursday, April 2, 2015

Semi Colon: Book Recommendations from the Bottom of my Pile

A sad fact about cancer is it took away one of my life's most pleasurable activities - reading.  I've been a reader since I was a little kid; some of my best days were spent outside, holding a book as big as me, sitting in the cool shade of a tree on a hot summer's day with a glass of ice water and a slice of white bread.  I became immersed in the lives of people far away and in different generations as grass tickled my legs and ladybugs buzzed about. I've been a hooked reader since Dick and Jane chased Spot, and I had thought I'd be a reader on my deathbed.

But something changed.  I assumed it was part of chemo-brain because I began having trouble concentrating on books.  I'd pick one up and put it down again, fretting at not being able to remember who was whom or what was happening.   I'd start chapters and pages over and over, even lowered my reading standard.  Eventually, I just give up. Reading was, for the first time, not fun.

This was my secret shame.  I told no one.  Losing my love for reading was worse than losing a breast, or a job.  It was like losing my soul.

But it has been about 18 months since my last hardcore chemo and I've been on only Perjeta/Herceptin and Zometa since then. People have been sending me books all along.  And I discovered that I finally have been able to sit down, read them and enjoy them again.  This is almost as much a miracle as my continued survival.   I don't know if chemo brain is wearing off - I do feel a bit more focused, at least as much as I can within my ADD capability.  Or perhaps something else is happening.   Whatever the reason, I don't question.  I just am happy.

But I still have a large stack to go through, so I will share some with you.

First up, we have Semi Colon,A Writer's Cheeky Journey Through Colorectal Cancer, by Neil Crone.

Neil Crone is a well-known Canadian comedian, having appeared on television in a variety of shows. He also is a columnist, and it is from his columns and email blasts this amusing and often heartwarming book was drawn.   Diagnosed with Stage III colon cancer, Neil's essays and thoughts during cancer treatment include everything from his enjoyment at being at home (even though his dog didn't treat him with special care), to relating a car ride while managing a "hair-trigger colon." And who Canada, you apparently get an actual cancer card!  There are, of course, the obligatory hiney jokes, and who am I to complain?  I've made plenty on the other end.

No matter what cancer you are diagnosed with, I think we can all relate to what Neil shared.  Humans are very much alike when it comes down to it, and when looking death in the eye, most of us end up feeling the same way - recognizing the importance of family and love, and the necessity of taking time to enjoy and experience a really good sandwich.  (Or, in my case, a hummingbird.)  Neil's book is hopeful, uplifting and funny.  Each chapter is interspersed with quotes that also provide inspiration. I do think that it is a must-read for anybody newly diagnosed with colon cancer or really, any kind of cancer at all. It's not so much about his treatment as it is what he learned by going through it.  Many cancer patients are looking for that light at the end of the tunnel, and Neil's book shows it is there.

Next, a book about managing breast cancer treatment, called Living Like A Lady When You Have Cancer by Donna A. Heckler.

So I confess, the title threw me off a bit.  "Living Like a Lady" made me think she'd want me to put white gloves on and pull the teacups out, and after C-diff, there is no hint of lady in me anymore, and all my gloves are medical-grade.

The idea that her writing would be prim and proper was quickly dispelled as I read the book. She talks about all the things you should know about managing cancer treatment that you might not be told by your doctor or nurse.  The tone is more like your best girlfriend is giving you realistic advice as you go through the mastectomy/radiation/chemo process than it is a manners lesson.  She gives quite fine advice too, not holding back, telling you what to expect at each step along the way.  In a conversational style, she tells you how your hair will fall out and not to be surprised about where it happens.  She gives advice on creams to use for radiation and chemo, how to handle hospital visits, what chemo complications might exist, how to manage support, etc.  And, like me, she urges you to drink your water!   There is so much more; I think she covered every topic a newbie to cancer would want to know.  It is a very comprehensive book, with pull-out boxes sharing what she wrote in her blog at the time it was happening to her. Because medical timelines are often different for different patients, this is not a book that has to be read in order.

She advises living life "radiantly."  Like Neil, that means appreciating each day for what it's worth. In writing about post-cancer life, she says she doesn't believe in finding a "new normal," that the old normal is possible after treatment.  Sure, she understands that that life after cancer will change, as it does for all of us, but says that maybe the changes are what should have been your previous normal, which is an original and refreshing viewpoint.

I really cannot recommend this book enough to the newly diagnosed breast cancer patient.  If you know somebody who has just been diagnosed, this will make a great gift, providing numerous tips for managing breast cancer treatment, and rest assured, she definitely discusses unladylike topics!

And last but definitely not least, The Smile Never Fades -- Compelling Essays by Breast Cancer Survivors by Bill Bastas.

I met Bill at SXSW and was instantly charmed by him.  He had sent me this book to review 6 weeks previous and I'd flipped through it,  but in preparations for the event that led me to him personally, I didn't have time to really go through it or blog about it.  I'm happy to make up for it now.  Bill's book is a series of photographs of women who had breast cancer, taken with their pets, along with essays they'd written about their experiences and how their pets had helped them.  It is a unique idea to put in a book but not one unknown to cancer patients.  We always mention our husbands, children, friends when we talk about the support we get in dealing with a dread disease, but our pets are a big part of comforting us too.  The years I was terribly sick and spent a lot of time in bed a cat was next to me 24/7. (She has since died - of cancer.)   My dogs have never cared if I'm sick or not,  making me get up to let them in or out for forcing me to walk whether I want to or not!  They lay a head on my lap or play, giving me a reason to smile.  Pets are part of our lives and acknowledging them this way is brilliant.

More than a unique book is what Bill is doing with the proceeds.  Bill has a personal experience with cancer, and has set up a charity in Texas called A Smile Never Fades.  He spends the money on what he calls a "Comfort Concierge" providing women with housekeeping services, transportation, food, or other needs that women with cancer face.

People have often asked me what charity to donate to.  Aside from the big one I support, StandUp2Cancer, I always suggest that people find these local charities - they are in every community and are usually run by incredibly smart and dedicated people with caring hearts.  They are not out for money or glory - they are trying to help people and give them exactly what they need. During my sickest, darkest days, a clean house was a gift beyond measure, and I cannot support Bill enough.

The book I linked to is not his only book - he has several others, including a cookbook.  So please search through them and buy one.  Not only will you see and read the stories of remarkable women, you will be helping out a wonderful cause, started by a remarkable man.

On another note,  I want to congratulate fellow blogger, Renee Sendelbach on her book Renee in Cancerland.  I haven't read it yet so I cannot give a review (I will in the future) but you can read her blog at Team S and get a feel for her writing style and story.  Or just go ahead and buy it without waiting for my opinion!  Renee is a metster blogger who was diagnosed at only 30 and is still with us 6 years later.    Her book is bound to provide comfort and insight for younger women facing this disease, and give hope for anybody diagnosed with metastatic breast cancer.